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Objective: To evaluate if a family presence educational intervention during brain death evaluation improves understanding of brain death without affecting psychological distress.

Design: Randomized controlled trial.

Setting: Four ICUs at an academic tertiary care center.

Subjects: Immediate family members of patients suspected to have suffered brain death.

Interventions: Subjects were group randomized to presence or absence at bedside throughout the brain death evaluation with a trained chaperone. All randomized subjects were administered a validated “understanding brain death” survey before and after the intervention. Subjects were assessed for psychological well-being between 30 and 90 days after the intervention.

Measurements and Main Results: Follow-up assessment of psychological well-being was performed using the Impact of Event Scale and General Health Questionnaire. Brain death understanding, Impact of Event Scale, and General Health Questionnaire scores were analyzed using Wilcoxon nonparametric tests. Analyses were adjusted for within family correlation. Fifty-eight family members of 17 patients undergoing brain death evaluation were enrolled: 38 family members were present for 11 brain death evaluations and 20 family members were absent for six brain death evaluations. Baseline understanding scores were similar between groups (median 3.0 [presence group] vs 2.5 [control], p = 0.482). Scores increased by a median of 2 (interquartile range, 1–2) if present versus 0 (interquartile range, 0–0) if absent (p < 0.001). Sixty-six percent of those in the intervention group achieved perfect postintervention “understanding” scores, compared with 20% of subjects who were not present (p = 0.02). Median Impact of Event Scale and General Health Questionnaire scores were similar between groups at follow-up (Impact of Event Scale: present = 20.5, absent = 23.5, p = 0.211; General Health Questionnaire: present = 13.5, absent = 13.0, p = 0.250).

Conclusions: Family presence during brain death evaluation improves understanding of brain death with no apparent adverse impact on psychological well-being. Family presence during brain death evaluation is feasible and safe.

1Department of Anesthesiology and Critical Care Medicine, Department of Emergency Medicine, University of New Mexico School of Medicine, Albuquerque, NM.

3New Mexico Donor Services and University of New Mexico School of Medicine, Albuquerque, NM.

4Department of Emergency Medicine, University of New Mexico School of Medicine, Albuquerque, NM.

5Department of Surgery, University of New Mexico School of Medicine, Albuquerque, NM.

6Department of Neurosurgery, Department of Neurology, University of New Mexico School of Medicine, Albuquerque, NM.

7Department of Anesthesiology and Critical Care Medicine, University of New Mexico School of Medicine, Albuquerque, NM.

* See also p. 1002.

Supported, in part, by an internal grant from the University of New Mexico Health Science Center Research Allocation Committee.

Dr. Tawil serves as the Associate Medical Director of New Mexico Donor Services (local Organ Procurement Organization). Dr. Brown is employed by James Cook University and receives book royalties from Pearson/Brady. The remaining authors have disclosed that they do not have any potential conflicts of interest.